Thursday, December 4, 2008

What a crazy time...

I can't believe how long it's been since I wrote here. This last month has been so busy with day to day normal crap... I'm loving every minute of it. I'm realizing how much our lives really revolved around appointments, medicine, and blood work. Finally to have a break and enjoy normal things, it's a huge relief.

We're going a while between tests right now. I'm happy and scared. Happy because the doctors finally feel confident in TJ's health to go this long. Scared because we're really assuming A LOT of things are OK. But this is normal. Blood work and appointments weekly aren't. So I am assuming that over time I will get used to this too.

Is it odd that I still count respirations, check blood pressure, and monitor the amount of fluids he drinks? Maybe, but there is where I find my comfort. When all these things are OK, I know he's OK. I'm neurotic, but with purpose! Ha Ha, that makes it alright.

We're getting ready for Christmas here at The Wilson House. I'm holding out hope and faith that this will be a better Christmas and Winter than last year. Santa brought TJ a snow suit and snow boots last year, he never even had the chance to try them on. We were so sick after CHristmas and into the New Year, then into the hospital for the remainder of Winter.

This year Santa's bringing a sled, we're planning on using it every chance we get. We'll be the idiots out with a dusting trying to get our sled to go down a mini-slope! But one thing I've learned from all of this, you take advantage of whatever is put in front of you. Experience it all, because when no one's looking BAM! life kicks you, hard!

We go for blood work next week again. I get blood work too this time. I've spent so much time taking care of TJ that my own health gets pushed aside. So it's time to address that. First of the year I will be coming to terms with the fact that I've allowed my ass to get fatter and I'm using my son's health as an excuse. But I'm waiting til New Years... because that's just what we do. I will be starting back on WeWa, I do miss my chubby chat friends, and I will be walking so I can do some 5K's next summer.

Finally it feels as though I can pay attention to these things. It's taken a while but I hope we stay here. It's nice to feel normal and do normal things.

Monday, October 27, 2008

Catching up

I'm a bad blogger, what can I say. I just can't seem to find the time to sit everyday and blog. I look at some people's sites and I know I'm inadequate.

TJ's birthday was wonderful. Thank you to everyone who sent cards and/or presents. He is starting to realize what mail is and enjoyed getting the envelopes. He got some great gifts. The "Big One" (isn't there always a big one?) was a scooter. He had been using one of these in these in his physical therapy sessions,he really liked it and did well. He liked it better than the bike. I think because he always saw our neighbor Andrew riding his scooter down my dad's hill and TJ knew about scooters from him, he thought they were cooler.

Well, TJ is a scooter kid now. He loves it. One of the things Randy & I had dreamt about when we were buying this house and TJ was so sick in the hospital was TJ riding his tricycle around our floor plan. THis is an old house with the central chimney so it has a round floor plan. It's so much fun. When Randy was finishing the floors, one of the driving thoughts was that TJ will have a blast playing on the hard floors with his bike and cars.

So realize that TJ's bike and scooter are in the house and we have daily chase scenes with one of us on the scooter and him on his bike. He rides the scooter forward and backwards and is starting to try and turn it. He's really impressive.

So he had 2 birthday parties and we all had a great time. Last year was an emotional milestone with his 2 year birthday and all he'd gone through. This year was very much the same. After spending the first part of the year in the hospital again, and dealing with the life and death of the whole things once again, this birthday was a very sweet celebration.

I feel like we've turned a corner of sorts with TJ and his health. Someone asked me if we were back to normal yet. I replied without thinking, "We're learning what our normal will be."I just pray that this continues and I try to trust the health he's found and been given.

WHat's our new normal like? Good question.

Well, medicine is obviously a daily part of it, but not as much as we had been on. RIght now he only takes 4 - 5 doses a day. 2 of those are his anti-rejection or Immuno-Suppressent medicine Prograf (also called FK). He takes Imodium 1 0 2 times a day and he takes Sodium Bicarbonate once a day. That's it. Amazing. Last year we were on 10 different meds and 2 dozen doses. There are days I have to stop and think to myself, have I forgotten something. Nope, just don't have as many to give. It's nice. We have our days back again. We have our nights back again. I don't have to wake him up in the middle of the night for meds. He only takes 1 medicine at a time now, I don't have to give more than one and hope he doesn't get sick on them. I'm getting spoiled

Sanitizer and hand washing now that we are getting out and about more is almost a little obsessive. We have to keep our hands clean, it's the best way to avoid getting sick.

Normal 3 year old stuff, playing, reading, fighting, tantrums, laughing, jokes, and games. Let us not forget coloring, painting, and Play-doh. Dinosaurs, Bob the Builder, WOnder Pets, Caillou, Clifford, George, and don't leave out anay and all construction vehicles.

Our normal is great. I find myself unwinding and yelling less. I find myself having more patience and being more creative. I find myself giving thanks more and more every day.

Our normal life is slower and calmer than it was a year ago. Less doctors and appointments, less stress. It's nice, I can see our future again.

TJ did have a clinic visit this last week. At clinic they check bloodwork, Echo, EKG, and do a hands on physical exam. He is 39 1/2 inches tall and 40 pounds! He's a big boy, but appropriately big. Not overweight and putting on muscle, that's a good thing. The doctors were thrilled at how good he looked.

His echo looked great, EKG was normal, and overall good blood work.

We do have a potassium issue, we're really high. Almost to the point we were hospitalized before. His immuno-suppressent causes that. We need to watch Potassium rich foods and avoid them. I will admit that we havent been giving it much thought, oops! So this weekend we cut back on some of his foods, we go tomorrow AM to recheck and see how we did.

Liver enzymes were the other problem, they are elevated again. The Liver docs think this is due to EBV Disease. Yup, that's right we don't just have Epstein Barr Virus, we now have the freaking disease. Actually nothing really changed except what they are calling it. It's because he is immuno-suppressed. His immune system can't stop the virus from reproducing, so even though he doesn't have an actual infection, his body is dealing with the virus. This virus commonly causing liver inflammation, thus the elevated Liver Enzymes.

They want to track his EBV levels and his LFT's (that's the liver tests) monthly and monitor them. THey aren't compelled to do anything because he isn't presenting any symptoms. They think he will have these elevated numbers for a while, years possibly.

The possibility of the PTLD (what he had Jan - March) is still there and there is no crystal ball that tells us when or if it will come back. It could rear it's ugly head anytime, even years from now. I try not to think about that and instead focus on how well he looks and his energy that just radiates off him

It's that energy that is so reassuring. When he was at his sickest, you couldn't feel him. That used to scare the hell out of me. Now you can feel him before even touching him. It's the way it should be. I'm trying not to panic about all the crap that "could" happen and instead focus on what is happening. Easier said than done for a Mom, I'm sure a lot of you know what I mean.

Alright, I've babbled long enough, wrappin up. Fingers crossed potassium is better today and we can go a couple weeks without more trips to doctors.

Wednesday, October 15, 2008

Happy BIrthday TJ!

Happy Birthday my beautiful boy.

You are an inspiration to me every day.

I want to be a better person, a better Mom because of you. You remind me that miracles happen and good people exist and help others daily. You make me stop and look around, you make me stop and enjoy YOU.

We get so wrapped up in our day to day lives and the dramas that ensue, we get so busy doing this and doing that, we forget to BE. Don't do, just be.

You help to me to BE. To be in a moment and enjoy every little aspect of that moment, a hug, a smile, a special look when you figure something out, a scream, a fight, I treasure every one them.

All we've been through makes me feel as though each day is an extra special day to be celebrated.

I say a prayer thanking GOD for gifting you to me.

I say a prayer thanking GOD for allowing you to stay with me.

I say a prayer asking GOD to please continue healing your body.

I say a prayer asking GOD to please keep you strong.

I say a prayer rejoicing and celebrating YOU and your life.

I say all these prayers with a full heart filled with love & gratitude.

I also remember today another little boy and his Mother. This little boy I imagine as a guardian angel watching over TJ. This little boy gave TJ his life and his heart. I say prayers today to that family, thank you for giving my son a second life.

As I sit and remember TJ's birth, I wonder when that little boy's birthday was. I think of the much different thoughts that Mother has on that day. I cry for her once again.

Please say an extra prayer today for our donor family. Because of them TJ is here today celebrating a 3rd birthday.

We always say how amazing medical science is, and how what they can do now is amazing. But none of it would be possible without the selfless acts of donor families.

They are the true heroes.

Wednesday, September 17, 2008

Post hospital rambling and a learning experience for Mommy.

As I was saying before, what a difference this hospitalization was for us. TJ & Mommy both. I felt different throughout the whole thing. Even the phone call didn't set my heart into panic mode. It was just kinda matter of fact, deal with it, come home. That's exactly what happened.

TJ was a bear for most of the time, he didn't want to be there at all and made it very known to all that came near. He didn't want to be there and he didn't like anyone. He looked at a nurse drawing blood and in a tearful hurt voice told her "You make me Sad." I don't know who was more sad at that moment, TJ or the nurse. She felt really bad, but it's what we have to do.

He'll eventually learn that certain things have to be done and to grin and bear it. It sucks, really, but he's alive and living life and enjoying so manythings, it makes it all worthwhile.

I see other patients who have so many complications and medicines and tubes and devices hooked up to them. I thank God everytime I see them. No, I wouldn't have chosen this road for us or for TJ, but at least I have a relatively healthy child who can run around and play most of the time. There are so many kids out there who will live a lifetime from a wheelchair or with a ventilator hooked up to their throat. How can I complain about our life?

The steroids they gave him to combat the rejection make him HYPER! I mean can't keep up with him, bouncing off the wall, can't focus, grabbing things quicker than you can blink, and crying or screaming for no apparant reason HYPER. Seriously, I was at my end yesterday afternoon. He was nuts.

Today he's much calmer and is actually able to sit and play and be calm. He seems much happier, so therefore so is mommy :)

I had a horrifying moment yesterday, I'm still horrified by it. You know that saying "Kids will put anything they can in their mouth," well TJ hasn't done that for a while, until yesterday.

Now remember he's on a immuno-supressant to keep his immune system compromised so he won't reject. This means we have to always wash hands, use sanitizer, not touch our face... blah, blah, blah. HA Try to do all that with a toddler! You can see where this is going right?

So we're at the checkout line of the grocery store, I have emptied the cart and placed the "Place Between Orders" stick at the end of my groceries so the next person can start unloading. I reach/lean around TJ, who is sitting in the front of the cart, grab my wallet and when I stand back up I see that he has...

the "Place between orders' stick - IN HIS MOUTH!!!!! pretending it's a bone. BLAHH!!!!

*cue sirens and flashing red lights*

I freak out and my first and foremost thought is "Oh Shit, I can't sanitize his mouth, what the hell am I supposed to do."

I'm imagining germs and bacteria crawling all over his mouth, bleck! What the hell was he thinking. The cashier is looking at me like I'm nuts. Truth be told, I probably looked a little nuts.

So I'm on watch for the next 3 days. I'm praying he didn't actually "lick" the damn thing. I keep thinking about the raw chicken juice and all the other bacteria ridden food things that sit on that grocery belt. *Shudder* That stick touches all of that and how many hands. Even if he WASN'T immuno-compromised I think I would be freaking out, it's so gross.

I don't know what he was thinking, well I know he was pretending it was a bone, so probably he was thinking "I'm a Dog." But that doesn't help the situation.

So lessons learned.

1. Steroid jacked children are very quick
2. Never underestimate a 3 year olds randomness
3. Add Scope to the "on the go" bag

Sunday, September 14, 2008

A step back in time

We're back at the hospital. TJ was having a pretty bad rejection, so in we came for steroid treatments.

This time around is so very different. In the past TJ has always been the life of the floor. He was always out of bed and chasing after his favorite nurse or doctor. THis time not at all. He is really upset about being back in the hospital. He doesn't want to see any nurse or doctor. In fact he tells them to "Get Out, Please" at least he's polite about it.

Being paged and interrupted, so I guess I'll try to finish this later.